How did you discover / suspect recurrence?

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Simbobby
Simbobby Member Posts: 140
edited October 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

I am curious as to what symptoms or signs made you look into advancement or recurrence. I have completed chemo, radiation, reconstruction and am now on Femara and Prolia. I see my oncologist every six months and he says we’ll grow old together.

How did you know that something was off?

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2019

    I couldn't walk. My lumbar vertebrae was mush, according to the spine surgeon who did a five level fusion. It had been eaten away by tumor. Hardly any back pain until I became incapacitated. Thinking the initial discomfort was muscle strain, a trial of home remedies such as ibuprofen/rest/ice, etc. didn't help.

    Neither the urgent care physician or my internist's nurse practitioner had a high enough level of suspicion to order imaging so it took a couple weeks before an orthopedic clinic doctor did an x-ray and we saw the damage...

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    I had a lump

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  • kbram
    kbram Member Posts: 185
    edited August 2019

    I had a lump as well. Six years after my initial diagnosis and a double mastectomy.

    Kathy

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  • kbram
    kbram Member Posts: 185
    edited August 2019

    I had a lump as well. Six years after my initial diagnosis and a double mastectomy.

    Kathy

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  • Brooke_97
    Brooke_97 Member Posts: 1
    edited August 2019

    hi I’m 22 years old and I have autism and I’m kinda scared that I may have breast cancer or something I noticed today my nipple going blue or purple and lasting for a very long time and something came out of it. It was white but I don’t know Wants happening to me if anyone has any answers for I would like to hear them please I really need help with this I’m to young to have breast cancer

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  • TB90
    TB90 Member Posts: 992
    edited August 2019

    Brooke, sorry you are so worried. Your symptoms are not necessarily a sign at all of breast cancer. Please stop worrying and make an appointment with your doctor for further reassurance and any tests if necessary. Thanks for reaching out to this community of support and please let us know how you make out after your apt with your dr.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2019

    yes, you should see your doctor.

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    Brooke, you could have an infection or something more common. Please do make an appointment to get it checked.

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  • JudyO
    JudyO Member Posts: 225
    edited August 2019

    I haven’t been on the board for years. My initial diagnosis was in May 2008. I had ILC and was told it was when it retirns not if, My tumor is PR negative so that amkes it bad, I have had some back pain so had an MRI done, Just got results, may be mets, I am having a horrible time handling this. I am one big bundle of nerves and sadness. Just had my first grandchild, can’t look at her without so much sadness. Thanks for listening to me...Jud

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  • Anotherone
    Anotherone Member Posts: 633
    edited August 2019

    yes it is not great Judy. I find consolation in my daughter being not 2 as she was when I was diagnosed originally but close to 15 now. My job is done in large part. If I have average 4-5 years as per Cleopatra trial for my histology and proposed treatment it will be done even more. Not great to contemplate one's mortality. Mind , once initial shock subsides you may find out that you will live for quite a few years with a good quality of life and help with child minding a lot :). Besides it may not be metastasis.

    In my case I could not perform the same on a squash court due to breathlessness/tachycardia more than usual and had a dry annoying cough.

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  • mistyeyes
    mistyeyes Member Posts: 584
    edited August 2019


    Simbobby- I am glad that you posted this. I am always worrying about reoccurrence also, trying not to let it take over my brain thinking each little twitch I feel is cancer.

    I'm very interested in the responses.


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  • JudyO
    JudyO Member Posts: 225
    edited August 2019

    Thank you for the replies. Nice thing about HER+ is all of the treatments....went from being the worst to one of the best ones to have. My hairdresser's aunt is over 15 years with HER+ mets...


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  • gailmary
    gailmary Member Posts: 332
    edited August 2019

    We didnt suspect a thing as I thought it spread from a breast tumor and my tumor was removed 9 yrs earlier. Severe pain in shoulder and arm believed to be a rotator cuff tear and bursitis proved to be more when physical therapy didnt help and I had an mri. Surprise!

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited September 2019

    My oncologist believes my new Dx is a new cancer, pathology report says recurrent cancer, so who knows.

    I've had a lot of biopsies in both breasts, with the left breast (BC breast) having several Dx of ADH, ALH, DCIS, and other findings. After my DCIS Dx in 2018, I developed what I thought was scar tissue in the form of a lump from the various biopsies. I had a mammogram, US, and breast MRI all of which indicated suspicious mass and 2 suspicious nodes. Core biopsy confirmed IDC. Had a BMX on 8/5, final pathology IDC. Suspicious nodes were benign, found to be reactive nodes.

    Original Dx was at 12:00 position, DCIS was at 1:00 position, new IDC was at 2:30-3:00 position. This last one appeared to grow quickly, from not there to ultimately 3.2cm in less than a year.

    I'm choosing to take my MO's stance that it's a new cancer, but even if it's a recurrence it's local and treatable.

    Tracy

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  • rebajo160
    rebajo160 Member Posts: 1
    edited September 2019

    First time posting. Hope it is in the right place. I had breast cancer (HER2+) 5 years ago in left breast. I had lumpectomy, chemo, radiation and Herceptin. Just finished my Letrozole. I just noticed I have a fairly good sized lump on same side, but closer to my collar bone. I don't know how long it has been there. I don't usually feel around in that area. I see my oncologist on Tuesday. Has anyone heard of or had experience with the reoccurrence happening in that area? It isn't painful but a little scary. If it is cancer, seems like it grew pretty quick. I had a clear PET scan a year ago. Thank you for any input.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited September 2019

    rebajo I had a lump near there. Turned out to be a lipoma. But good to get checked.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2019

    rebajo, glad you are getting it checked soon. Keep us posted.

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  • ReneeK
    ReneeK Member Posts: 3
    edited October 2019

    I'm curious if anyone found out about liver mets via blood work. My last labs show an elevated liver enzymes. Of course, I'm having tons of anxiety. I go back in 4 weeks for more labs and if it's still high, I'll move forward with an ultrasound. Anyone discover mets via blood work?

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  • Artista928
    Artista928 Member Posts: 2,753
    edited October 2019

    I don't have mets but my liver enzymes are higher than normal and go up and down. Fatty liver, high cholesterol, tamoxifen and other meds can be the culprit.

    So blood work is not enough. I've had u/s and that's where my non alcoholic fatty liver was found. GL

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  • Polly413
    Polly413 Member Posts: 124
    edited October 2019

    I am interested in this question about elevated liver enzymes. I had pain in the chest area and went to ER thinking I was having a heart attack. Liver enzymes were very high but heart was fine so ER doc wanted to send me home. Panic time as I worried it was liver mets so called oncologist from my bed in the ER and he ordered a sonogram. Turned out to be a gall bladder attack (liver was fine) and led to gall bladder removal. From this I conclude that oncologist was concerned the high liver enzymes could well have been mets. So thankful it was gall bladder instead.Polly

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  • ReneeK
    ReneeK Member Posts: 3
    edited October 2019

    Thanks ladies, I know there are a few different reasons liver enzymes can be high. I'll just have to wait to see if my numbers improve next month. Polly, about 3 weeks ago I thought I was having a heart attack! All of a sudden, my right jaw and back started feeling constricted. I could barely take pain and tightness and was very close to calling 911 but it eventually started fading after about 10 mins. I have never felt anything like it. Who knows......

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  • Racy
    Racy Member Posts: 2,651
    edited October 2019

    Renee, you may have had gastric reflux.

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